February 9 Autism Sunday

You may be aware that many consider it as a generational disease, of these current two decades, that we need to find a cure for. It's incidence among children has soared over these past 20 years. Many of us may blame vaccines for this. A growing number of others of us view this condition simply as a difference of thinking that society needs to understand and accept. A growing number of us adults are being diagnosed with it relatively late in life. Many of us consider it as a different state of seeing the world and relating to people and to ourselves. A different state of being. A matter of identity.

What Is February 9 Autism Sunday?

This is a day that the autism community has set aside in an attempt to dispel stereotyping and uninformed views of autism. It may not be an official day but it's important to the many families with autistic relatives and individuals who know autism's reality. This includes diagnosed or self-diagnosed people. By individuals I also include those teachers, paraprofessionals, counselors, and psychologists who work with autistic people, children or adults. This adds up to many people! Daily, my Facebook Newsfeed is filled with posts, either by parents who call for society to welcome and accept their children or other relatives or by ASD adults who call for society to understand them and welcome them. Months ago, the US Congress held hearings supposedly aiming at "helping autistic people." Instead, we who listened to some politicians and others speakers, heard autistic people referred to as "tsunamis," as "burdens," as "tragedies" and as "drains on society." Reader, these demeaning terms were made about a group of people, many who heard these names and knew exactly what they meant!

My Experience

About 11 years ago, my beautiful, precious daughter was officially diagnosed with Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS)at almost age 3. PDD-NOS is a form of autism. Thanks to early childhood intervention and intensive love and affection and input, she has spent her school career mainstreamed, getting good grades and participates in our local church youth ministry activities. She is currently 14 and in the 8th grade. She does have social challenges with making and keeping friends. I, her mom, had self-diagnosed with ASD years ago. This is because, from infancy on, I was never a "normal baby." It was at age 5, when I lasted only a day in kindergarten, that my behavioral challenges showed up and stayed with me throughout my growing up years. I spent my childhood and teen years in and out (mostly in) special education settings. I entered adulthood much unprepared to function in the outside world, and always wonder why I was so different from everyone else. My problems were always seen as emotional or behavioral in origin, but I was never satisfied with that explanation. After spending years accessing an official ASD screening, I opted to seek one from an autism center two hours away (each way) from my local St. Louis, Missouri community. The doctor doing the screening is using the results from the January 3, 2013, intensive cognitive tests I took then, along with an ASD interview, a physical exam, and a Tuesday, February 4 phone API interview with my mom, to come up with my results. I remain apprehensive as I await the results to be handed down! Will it be a time of discovery or one of ending up with even more questions than when I began?

What Does All This Mean For Us?

Every one of us in the autism community know what this means for us. If you do not know someone who has an ASD diagnosis or is self-diagnosed because of their life experience, that's because they probably have not disclosed this to you. The media only occasionally cover families of ASD children, and almost never cover ASD adults. They briefly did this because a celebrity singer, Susan Boyle, came forward with her late in life ASD diagnosis. You may think of famous autism figures like Temple Grandin, Stephen Shore, John Elder Robison, or Liane Holliday-Willey. There are other less well-known, autistic people who have experienced success, starting their own businesses or finding satisfying careers in writing, computers, or other careers. However, for every instance of this, there are many other ASD people who are unemployed or underemployed, and over 70 percent are unemployed. Many of these use either Supplemental Supplemental Security Income (SSI) or Social Security Disability (SSD). Worse, others have turned to lives of crime or are homeless. Many aging parents, their ASD adult children living with them, fear what will happen to their adult children when they die. Horrific abuse of autistic children and adults runs rampant, being committed by bother caregivers and professionals. The heart-wrenching story of the high-profile autistic nonverbal teen who wandered off and was found dead two months later, is only one sad example of "autism wandering" that contributes to missing persons and kills autistic persons. What does it all mean? Lost contributions. Lost full citizenship. Lost Lives.

Being Part of the Solution

We can be part of the solution. You may wonder, How? First, you can educate yourself about autism; below I'll give a few sites where you can do just that. Over a couple years ago, I launched a Change.org autism petition, calling on the US government to send $$$ to each of the 50 states, so each state can offer affordable autism services to anyone who wants/needs them. (This will also create many new jobs and stimulate the economy!). You can sign that Change.org autism petition here. Later, I launched the petition at SignOn.org. You can sign SignOn.org autism petition here. Thank you.

What do you think?

The Autism Society

The National Autistic Society

The photo at the top of this post is courtesy of Tina Marie Crane. It can be found here.